We are 144,984 members in 73 forums discussing 114,798 topics.

Help with Abbreviations

All TopicsForum: DCIS (Ductal Carcinoma In Situ) → Topic: Feeling of milk let-down with DCIS?

Topic: Feeling of milk let-down with DCIS?

Forum: DCIS (Ductal Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for DCIS.

Posted on: Feb 7, 2012 05:54PM

crazypenguinsfan wrote:

Did anyone else have a feeling like they were having milk let down (despite not breast feeding) in their breast before being diagnosed with DCIS? I mentioned it recently to my bs when I got diagnosed and he basically shrugged it off. I stopped nursing my youngest son in 2000, I swear I had the feeling in the affected breast for the last 10 years, but never having heard of dcis and not feeling any lumps, I figured it was only pms. And micro-calcs just showed up this past mammo. 

Thanks for any input any of you might have :)

Steph

Log in to post a reply

Page 1 of 2 (35 results)

Posts 1 - 30 (35 total)

Log in to post a reply

Feb 7, 2012 05:57PM YramAL wrote:

I had that feeling in my breast about 10 years ago-like my milk was letting down. I had at least 9 annual mammograms between then and being diagnosed with IDC. My tumor was in the exact same spot I had felt that feeling all those years ago. Was it related? I'll never know.....

Mary 

Mary-Oncotype Score 11

Dx 12/7/2009, IDC, 1cm, Stage I, Grade 2, 0/4 nodes, ER+/PR+, HER2-
Log in to post a reply

Feb 7, 2012 06:21PM crazypenguinsfan wrote:

wow! I know this is all anecdotal, but it just seems as though there might some physical signs we women might notice when a duct has strange cells within it / cells crossing through the duct wall. I won't ever know for sure either, although now, if I have a twinge in my other breast I won't ignore it this time.

Hope you are well Mary!

Steph

Log in to post a reply

Feb 7, 2012 07:48PM Anne888 wrote:

No, I had absolutely no strange feelings in that breast prior to diagnosis.  When I was told that I had breast cancer, you could have knocked me over with a feather!  Oh, and I did breast feed for almost a year, so I was well acquainted with that feeling.  I guess, like everything else, it varies.

Dx 3/2001, DCIS, <1cm, Stage 0, Grade 3, 0/3 nodes, ER+/PR+, HER2+
Log in to post a reply

Feb 8, 2012 12:31AM crystalphm wrote:

Yes, and I did not think about it until you I read your thoughts. Maybe 5 years before my cancer was discovered. Interestingly enough, my doctor felt my cancer had been growing for that long, 4-5 years, and the mammogram just never picked it up.

After my mastectomy I have phantom pains that feel exactly like milk letting down too.

Log in to post a reply

Feb 8, 2012 12:39AM 1vamom wrote:

I was having painful "blocked" feeling in my left breast, as I was breastfeeding my daughter (this was fall 06-fall 07), I asked several drs, all said must be a blocked duct, by Dec 2009, this was the same place I asked my doctor to check, almost as an afterthought, as my visits to her were yearly, and without incident. This blocked feeling had come and gone since I had weaned my daughter, and i would have feelings like milk coming down, also.

This turned out to be where my tumor was growing, found in dec. 2009.

what a long, strange trip it's been...

Dx 12/18/2009, IDC, 3cm, Grade 2, 2/17 nodes, ER+/PR+, HER2-Chemotherapy 03/18/2010 Adriamycin, Cytoxan, TaxolSurgery 09/14/2010 Mastectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection, Axillary Lymph Node Dissection (Left)
Log in to post a reply

Feb 10, 2012 08:40AM CLP821 wrote:

I've never been pregnant or breast fed, but about six years ago I went to my gynecologist because of breast pain in the exact same area that I was just diagnosed with DCIS.  I told him it felt like I had acid reflux in my breast - like there was hot fluid backing up.  The pain was constant and unrelated to my menstrual cycle.  He told me that sometimes women have chronic breast pain for no apparent reason.  I had a lumpectomy two days ago and am curious if the pain will finally go away.

Christine

Dx 2/3/2012, DCIS, 2cm, Stage 0, Grade 3, ER+/PR+
Log in to post a reply

Feb 12, 2012 11:56PM cocoapuff wrote:

Just so you know I had the same feeling.  I posted about it on this thread a while back.

http://community.breastcancer.org/forum/83/topic/747011?page=1#idx_10

I told my doctor she thought it was interesting but said she had heard nothing about it being a sign or symptom.

Dx 6/22/2009, DCIS, 6cm+, Stage 0, Grade 3, 0/4 nodes, ER+/PR+
Log in to post a reply

Feb 13, 2012 01:14AM smithlme wrote:

5 years ago I was on my way to see my newest grandbaby and had the feeling of a let down. I shrugged it off as being excited to see the baby and my motherly instincts kicking in. It happened a few more times during my visit. Once I got home I felt a longish lump on the left side of my breast. After a mammogram, ultra sound, and punch biopsy I was diagnosed with BC. I've met a few other women who've had the same feeling.

Dx 3/31/08, DCIS, ER+/PR- BRCA2+...I am NOT a survivor...I am a 2X breast cancer A$$ kicker!

Dx 3/28/2007, IDC, 2cm, Stage II, Grade 3, 0/9 nodes, ER-/PR-, HER2-
Log in to post a reply

Feb 13, 2012 01:27AM 1vamom wrote:

to me, this speaks to such an innate "awareness" system, definitely needs studies,...

I, myself, knew many years before i was diagnosed, that this would be my path.  I was aware, before i knew what Cancer was, that We would be "involved."

When I was diagnosed, It was not a surprise.

what a long, strange trip it's been...

Dx 12/18/2009, IDC, 3cm, Grade 2, 2/17 nodes, ER+/PR+, HER2-Chemotherapy 03/18/2010 Adriamycin, Cytoxan, TaxolSurgery 09/14/2010 Mastectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection, Axillary Lymph Node Dissection (Left)
Log in to post a reply

Feb 13, 2012 05:33AM windlass wrote:

Yes, I had it too. I have it more now that the breast is gone. Phantom sensations.

"He will cover you with his feathers, and under his wings you will find refuge." -Psalm 91 . . . . . . . Completed: UniMX, DIEP reconstr; A/C x 4; TDM1 x 4; Taxotere+Herceptin x 4, 33 Rads; TDM1 Phase II Trial x 9; Tamoxifen, prayer.

Dx 1/18/2011, IDC, 6cm+, Stage IIIc, Grade 3, 12/28 nodes, ER+/PR+, HER2+Radiation Therapy External
Log in to post a reply

Feb 13, 2012 06:58AM thats-life- wrote:

I have it too!..i actually used to dislike the let down feeling when i was breast feeding (14 months)..so i am aware when it happens as i dont like the reminder... Although i am stage IV, my tumour wasnt removed...but i also have a spot of dcis according to my path report...so that is an interesting observation of yours.

It is the opportunity to build what one loves into something permanent that makes this very difficult game worthwhile. mets skull, rib, hip, spine.

Dx 8/2010, IDC, 1cm, Stage IV, mets, ER+/PR+, HER2-
Log in to post a reply

Feb 13, 2012 08:07PM crazypenguinsfan wrote:

So interesting to hear from others that there "might" be signs something is going on in there... just the importance of taking note when something seems out of place (not just attributing it to pms!) and following up on it. I would get my mammo and the doc would examine me and I never mentioned the feelings I was having because we couldn't feel or see anything... I have since had an mri once the microcalcs showed up. I wish I had mentioned this to my doc! But, not sure it would have made any difference because there is not a lot of info. available at the gen. doctor level... they seem to be looking for lumps!

Ladies, thanks for the feeback :) and thanks for the link cocoapuff- don't know how I missed it! I have probably read most of the archives on this board :)  !!!

Steph

Steph

Log in to post a reply

Feb 13, 2012 10:17PM cinnamonsmiles wrote:

I never had any feelings with my DCIS. I had a green discharge for three years prior to diagnosis. At that point, the discharge turned bloody. Two months later, I found the lump. I did not to self exams and had not been to a doctor in about a year.

Mastectomy without reconstruction was NOT the worst or only available option. I chose it and am happy with my decision.

Log in to post a reply

Feb 14, 2012 12:06AM, edited Feb 14, 2012 12:13AM by mom2twins34

Yes, definitely!  

I felt it almost constantly for 7 or 8 months before being diagnosed with a breast full of IDC.  I only felt it in my left breast, which I thought was odd, but it mimicked exactly what it felt like when I was pregnant with and nursed my twins.  My gyn had dismissed my lumps because I was "too young for bc", so when the sensation started to be overwhelming a few months after seeing her, it didn't dawn on me that it could be related.  I honestly thought I must be pregnant because the feeling was so intense & I took multiple negative pregnancy tests for about 8 months!  I used to joke that I was going to end up on that "I didn't know I was pregnant" show because the feeling was so intense & I didn't know what else could be causing it!

It was when just the left side started leaking fluid that I finally insisted on getting it checked out & thought I'd either walk out with a baby or a cancer diagnosis!  The feeling was so similar to pregnancy & nursing, though, that I really thought it could go either way!

Thanks for asking this!  Glad to know I wasn't the only one.  My oncs said they hadn't heard of this before. 

Blog: cancerinmythirties.wordpress.com/ Diag. 4/2010, IDC, IIIc, Gr. 3, Posit. lymph nodes w/extracaps ext., Supraclav node+, er/pr+, Her2+, Neoadj chemo (DD A&C, Taxol), BMX, more chemo, rads, hyst/ooph (masses), herceptin, tamox, Zometa

Log in to post a reply

Feb 14, 2012 01:34PM crystalred7 wrote:

I am currenty waiting on mammo results, but my symptoms have been gradually building....Im so glad I saw this post thats exactly what mine feels like then I check and nothing is there! Its a very strang feeling.  I dont know if it means anything.  i have ver dense breast so I dont think the mammo I had is going to do any good :( guess I will wait untill I have a "major" symptom that the doctor seems to be looking for

Crystalred7

Log in to post a reply

Feb 14, 2012 06:32PM crystalphm wrote:

crystal...I wish I had been told to ask for a MRI if you are told breast tissue is very dense. The mammograms never picked up my cancer, and the doctor estimated it was growing about 4 years before I noticed a slight discharge and asked for more testing.

Therre is more information about this hear, about women with super dense breast tissue possibly needing a better screening tool than a mammogram. They told me every year mammogram is fine, but breasts are very dense, and ne4ver mentioned that means mamograms are not really readable...like finding a needle in a haystack....

Log in to post a reply

Feb 24, 2012 02:45PM frywoman wrote:

I definately had this feeling. I am so glad you posted this question because I always felt that I was keenly aware of my body and it was just my special observation. Incidentally, my dcis was generally painful (at least my breast was always tender) large over 10 cm, not detected by mammogram, I also had nipple discharge for a few months before diagnosis and finally developed palpable lumps. But that 'let down' feeling was going on for well over two years. And sometimes it felt as if my breast was warm just as it did when my milk came in. My children were 11 and 9 when I was diagnosed and I had not lactated for 8 years.

Dx 5/13/2009, DCIS, 6cm+, Stage 0, Grade 3, 0/1 nodes, ER-/PR-
Log in to post a reply

Feb 25, 2012 12:45PM chemhornet wrote:

I had the let-down feeling 3 months before my diagnosis of DCIS.  My oncologist said it was my guardian angel, but never claimed it to be a symptom of DCIS.  Three years later, both breasts are feeling it again, mammo negative, but very dense tissue.  See dr this week & will insist on MRI...  Glad to see I'm not the only one with this feeling Smile
Dx 2/2009, DCIS, <1cm, Stage 0, Grade 3, 0/3 nodes, ER+/PR+
Log in to post a reply

Jan 19, 2014 11:46AM LAstar wrote:

I'm so intrigued by this symptom of DCIS. I felt this for several months before I was diagnosed with DCIS.  Anyone else?

Dx 3/5/2012, DCIS, Stage 0, Grade 3, 0/2 nodes, ER+/PR-Surgery 04/06/2012 Lumpectomy (Left)Surgery 05/04/2012 Lumpectomy (Left)Surgery 06/19/2012 Mastectomy (Left); Prophylactic Mastectomy (Right); Reconstruction: GAP flap (Both)Surgery 10/05/2012 Reconstruction: GAP flap (Both)
Log in to post a reply

Jan 23, 2014 02:22PM Skiergirl wrote:

wow- and I thought I was just weird.  I mentioned it at every gyno appointment, and it was just put down as muscle or tissue "memory."  I felt that let down reflex in my right breast after not breast feeding for almost 17 years.  I also always had mastitis in my right breast twice for each if my three children...I guess I have wondered about a connection, but no Dr. Will agree there is one.  Hmmm...

Dx 10/2013, DCIS, Stage 0, Grade 2, 0/2 nodes, ER+/PR+Surgery 10/30/2013 Mastectomy (Right); Lymph Node Removal: Sentinel Lymph Node Dissection (Right); Reconstruction: TRAM flap (Right)
Log in to post a reply

Jan 24, 2014 12:25PM Summerwheat wrote:

I had breast pain in my right breast off and on for about four years, not related to menstrual cycle - very dense breasts, numerous mammograms did not detect anything, three ob-gyns pretty much dismissed the pain and told me to drink less coffee and yes, it's the hormones after pregnancies ... sometimes my right breast felt warm, and something just did not feel right. I had asked for a breast ultrasound two years ago, and my ob-gyn sent me for one, but at the imaging center, they told me that they can only do it if I had a palbable mass, which I did not, otherwise, the insurance would not pay for it. Looking back to when I breastfed the last time, in 2008, the right (DCIS) breast was always the one that had blocked ducts etc. Interesting.

Dx 12/5/2013, DCIS, 2cm, Stage 0, Grade 3, ER-/PR-, HER2-Dx 1/29/2014, IDC, <1cm, Stage Ib, Grade 3, ER+/PR+, HER2+Surgery 01/29/2014 Mastectomy (Right); Lymph Node Removal: Sentinel Lymph Node Dissection (Right)Chemotherapy 02/27/2014 carboplatin, TaxotereTargeted Therapy 02/27/2014 Herceptin
Log in to post a reply

Jan 27, 2014 08:04AM KimberlyAnn0218 wrote:

Funny, I had that observation AFTER my mastectomy. It was really creepy feeling. I did have a work-up in the spring for "chest pain" that was especially on the left--where my DCIS was found 7 months later...

Dx 10/11/2013, DCIS, Stage 0, Grade 1, 0/3 nodes, ER+/PR+Dx 11/8/2013, DCIS, Stage 0, Grade 2, 0/3 nodes, ER+/PR+Surgery 11/22/2013 Mastectomy (Left); Lymph Node Removal (Left); Reconstruction: Tissue expander placement (Left)Surgery 02/17/2014 Reconstruction: Breast implants (permanent) (Left)Surgery 02/17/2014 Reconstruction (Right)
Log in to post a reply

Mar 23, 2014 07:30PM Disneygirl44 wrote:

I've only just thought of this reading this thread, but I had the same sensation of milk let down this fall. My daughter is almost 9...I never would have made the association to dcis. But wow! That is so strange....I just thought I was crazy the first time around....

Dx 2/6/2014, DCIS, Stage 0, Grade 3, 0/0 nodes, ER+/PR+Surgery 02/24/2014 Lumpectomy (Right)Radiation Therapy 03/24/2014 External
Log in to post a reply

Mar 23, 2014 09:20PM motherofone wrote:

I too have had that familiar feeling of letdown prior to my diagnosis.  My daughter is a Sr. in high school so it has been ages since I nursed!  No leakage appeared of course.

Dx 1/31/2013, DCIS w/microinvasion <1mm, Grade ?, 0/1 nodes, ER+/PR, HER2+ >3

Log in to post a reply

Mar 24, 2014 08:53AM Rubiayat wrote:

I had pain off and on in my left breast. While it was not consistent, I thought maybe it was related to my cycle and didn't think too much about. Afterall, I didn't feel anything, have no family history and thought I was too young for bc (obviously I didn't know much about bc!!). Then my co-workers wife was diagnosed with bc at 37. She had been having pain in her breast before finding a lump. After hearing that my instincts told me something could be wrong and I needed to check it out. I had my first mammogram and sure enough - DCIS and IDC. I'm glad I listened to myself:)

Dx 11/7/2013, DCIS, 1cm, Grade 3, 0/3 nodes, ER+/PR+, HER2-Dx 11/7/2013, IDC, <1cm, Stage Ia, Grade 1, 0/3 nodesSurgery 12/11/2013 Lumpectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection (Left)Surgery 12/20/2013 Lumpectomy (Left)Surgery 02/11/2014 Lumpectomy (Left)Surgery 05/06/2014 Mastectomy (Left); Reconstruction: TUG flap (Left)
Log in to post a reply

Mar 24, 2014 09:07PM laffycat wrote:

This is incredibly interesting to me! Im new on here and glad I came across this.  I found a lump in my left breast below my nipple, doc is sending me for a mammo and sono in 2 days.  I have been having the milk let down feeling too!!  Not sure what to expect now and worried  Sad

Log in to post a reply

Mar 25, 2014 10:19AM Rubiayat wrote:

I hope it will be nothing laffycat. If it is, there is a wonderful community of support here to help you through:)

Dx 11/7/2013, DCIS, 1cm, Grade 3, 0/3 nodes, ER+/PR+, HER2-Dx 11/7/2013, IDC, <1cm, Stage Ia, Grade 1, 0/3 nodesSurgery 12/11/2013 Lumpectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection (Left)Surgery 12/20/2013 Lumpectomy (Left)Surgery 02/11/2014 Lumpectomy (Left)Surgery 05/06/2014 Mastectomy (Left); Reconstruction: TUG flap (Left)
Log in to post a reply

Apr 4, 2014 11:20AM audikos wrote:

I breastfed my three children (stopped nursing last one in 2006).  I hadn't experienced the let-down feeling since stopping nursing but it returned just a few weeks ago - - after being diagnosed with DCIS in both breasts.  I was beginning to wonder if my brain was playing tricks on me.  During the mammograms, ultrasounds and biopsies, I hadn't had that feeling.  After getting my diagnosis and being placed on the surgery schedule - I've been having the let-down feeling.  At first I was beginning to get paranoid and thinking that maybe the DCIS was spreading. I am glad I came across this post.  Thank you.

Log in to post a reply

Apr 4, 2014 12:59PM sandra4611 wrote:

I have been looking for posts about a let-down feeling for months but I guess I didn't search in the right way. Today I found you here! My situation is a little bit different...I did not have the let-down feeling before surgery due to DCIS, but after. My BMX was 7 months ago and every single time since then, when I get out of bed in the morning or stand up after spending an hour or two in my recliner, the let-down feeling happens. It is SO strong that it's painful and I grab my implants and hold tight, grimacing for 5-8 seconds until it fades away. It got so bad I would wake up and stay in bed for a half hour, all the while dreading having to get up.

I've asked my breast surgeon and plastic surgeon, but neither has heard of this. I've posted the experience on several other threads, but never found anyone else who had a let-down feeling. I had dense breasts and was blindsided by the diagnosis of DCIS. I chose BMX which was fortunate because pathology showed a lot of LCIS in the other breast. Apparently it was there for years, although it was never picked up on mammograms, even after a biopsy found DCIS and I had a bilateral MRI with contrast to look for anything in the other breast.

Worrying does not empty tomorrow of its troubles, it empties today of its strengths.

Dx 7/18/2013, DCIS, 2cm, Stage 0, Grade 3, 0/4 nodes, ER+/PR+Dx 8/23/2013, LCIS, Stage 0, 0/4 nodes, ER+/PR+Surgery 08/23/2013 Mastectomy (Both); Lymph Node Removal: Sentinel Lymph Node Dissection (Both); Reconstruction: Breast implants (permanent) (Both)Surgery 09/06/2013 Reconstruction: Tissue expander placement (Left)Surgery 12/06/2013 Reconstruction: Breast implants (permanent) (Both)Surgery 03/21/2014 Reconstruction: Breast implants (permanent) (Left)Surgery 06/15/2014 Reconstruction (Both)
Log in to post a reply

Apr 4, 2014 05:11PM LAstar wrote:

Wow -- interesting that you are having this feeling after BMX!  It doesn't sound pleasnat -- I hope it lets up for you.  

Dx 3/5/2012, DCIS, Stage 0, Grade 3, 0/2 nodes, ER+/PR-Surgery 04/06/2012 Lumpectomy (Left)Surgery 05/04/2012 Lumpectomy (Left)Surgery 06/19/2012 Mastectomy (Left); Prophylactic Mastectomy (Right); Reconstruction: GAP flap (Both)Surgery 10/05/2012 Reconstruction: GAP flap (Both)

Page 1 of 2 (35 results)